Editor’s Note: Author Nadine Silber recently presented this talk for a community parent forum. There are great suggestions for all parents to use to have proactive conversations about disability.
Hi. I’m Nadine and I’ve been waiting for this moment for nearly my whole life. Really. I mean it. I finally get to talk to THAT kid’s parents – the one who wasn’t nice to me and the one who was – because they both had an impact on my life.
I was properly diagnosed as being on the autism spectrum when I was in law school. When I was a little girl, autism was a rare diagnosis and never one that anyone would think to give to a girl, especially one who could speak – well, speak most of the time. Things are different now and people understand that girls can be Autistic too, even if we are still very often misdiagnosed first.
People didn’t miss the fact that I was Neurodiverse, though, even though they didn’t know why. Even though most of my differences were on the inside, sometimes they showed on the outside. For example, I flapped my hands a lot. Some people flap because they have so much joy inside that it just fills them up and spills out. Other people, like me, flap because it soothes them when they feel overwhelmed. Different Autistic people – different reasons for flapping.
So how are you supposed to know what it means? Every human being is different, so you should get to know people as individuals. And one way to do that is ask them why they are doing something. Sometimes, especially if they are kids, they may not know themselves, but the chances are they can tell someone in some way if they feel good or bad. That way may not be with words though.
What do you mean no words? How is my kid supposed to communicate with them? Communication isn’t just verbal. How would you communicate with someone who did not speak English? You would look for other things. When people take time, they can usually get to know us and connect with us. Kids often do that even better than adults.
So, you want something concrete. Okay, teach your children to never treat a person who is different with pity. We are not lesser versions of you. We are the only version of ourselves. Would you pity someone for being black? Would you pity someone for being gay? You might feel they are discriminated against – but that’s not the same.
A special message for you parents – please don’t tell a parent who has kids who have different abilities in any way that you are sorry that they are going through that, that their life must be hard etc. even if that parent seems to want or expect that response because you’ll be hurting their kid, in the long-run because that attitude devalues us, and especially in the moment if the kid is present. No matter how different that kid looks to you, you need to presume that the kid understands much more than anyone realizes.
Just like anyone else, we want acceptance, respect, dignity, kindness, inclusion; we never want to feel like your child’s volunteer project or good deed. Teach your children that all people are different in different ways and that’s a good thing.
The impact that your kid had on me – the one who bullied me and the one who accepted me – was on my self-worth. People need self-worth to survive and thrive. The world is better when people have it.
Okay, now that I gave you some general advice, I’m going to fill you in on some specifics about Autistic people:
1) I used the word Neurodiversity. Neurodiversity refers to the idea that the differences in how people’s brains work are naturally occurring. In other words, Autistic people are not part of an epidemic. We don’t have a disease. We think differently. Even if you took away the things that some of us might have a challenge with, like anxiety or epilepsy or speech apraxia, we would still be Autistic. We perceive the world differently and think differently. While we may need additional supports, because the world isn’t designed for us, different is not less.
2) That brings me to point # 2 – Passing. I’m passing right now. I’m working hard to make you feel comfortable by looking and sounding like you as well as I can. It’s hard work and later, I’ll be exhausted. What I want you to know is that I do it every day. Remember that when I make a mistake. I’m trying very hard. In part because I don’t want to be targeted in any way, but in part because I want to interact and the only way I can do it is on Neurotypical – that’s you – terms until the world feels comfortable with people like me.
3) Something you should know about Autistic people – we all have our own unique strengths and challenges. Don’t make assumptions. I have two sons who are also Autistic. While the three of us are alike, we are also different. I don’t speak for them – or for any Autistic people – but I will speak up for our right to be treated well, not underestimated if we don’t speak, not under-supported if we do.
4) For many Autistic people, being Autistic is part of our identity. It’s why we say “Autistic person” instead of “person with autism”. I am not a person with femaleness. I am not a person with Jewishness. But if someone wants to say they are a person with autism, that’s their right too. The people who do NOT have a right to decide how we identify ourselves are people who are not Autistic. Many Autistic people support the idea of Acceptance rather than Awareness. There’s no Black Awareness Month, no Women’s Awareness Month – We too have a culture. We have our own literature. We have our own language and our own history. I can name three published poets who write about being Autistic, but who do not speak, who some people would insultingly label “low functioning.” Some people pathologize us, but we are a people, not a pathology.
5) Finally, remember Autistic people may interact differently, but that doesn’t mean we are not interacting. Teach your children to reach out and meet us halfway. Accept the fact that people do things differently. If a kid doesn’t make eye contact, it doesn’t mean he isn’t interested. If a kid doesn’t talk, it doesn’t mean he doesn’t have anything to say. Just as you would want to have your child reach out and include a child from any other culture, have them reach out and include a child from our culture. Accept us. Respect us. Include us.
Nadine Silber is a writer and lawyer who lives outside of Philadelphia.